The loss of a child, through my journey of grief and mental health.

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Before William died I had no experience of the mental health care in the UK. I’d had no reason to need it personally, nor had I known anyone personally suffering with their mental health. It wasn’t even taboo, because I didn’t even afford it much thought. I would often catch the news, mental health being known as the cinderella service of the NHS. Hard to access, not enough facilities or not the right facilities. This may be true in some areas or for others experiences. But, I can say that had it not been for the care and guidance of the mental health team in Cornwall, I would not be here. They have been the scaffolding that has been wrapped around me for the last 11 months, and continue to be. When I fall I know they are there. When I’m falling and I don’t know it, they catch me.

Anyone in my position will know that time is like a punishment. Nothing you can do to stop it, always ticking by, excruciatingly slow. Initially, days passed in shock, weeks passed in disbelief and months have passed without me even knowing, carried along on the tidal wave of grief, churning me round and round in the eye of the storm, discarding me just where it wants too. In the initial few months, everyone has time, everyone touched by William, and they now have a life tinged with sadness, but albeit a life that they return too, maybe after the funeral, maybe after the inquest, maybe when I returned to work. Slowly people drift away back to their own lives, no time to sit with me anymore to go over and over things like I did back then. I still need to do that, so who do I lean on, who do I turn to when people are living their lives and I am on my merry-go-round of despair and can’t get off? I turn to those who I know will always be there, with a bucket load of time. Whether it be when I have a complete meltdown in the dairy aisle of the supermarket and the crisis team need to come and rescue me or whether it be the day before my scheduled one to one appointment and I need them now. I know I can rely on them to change my appointment.

I have full capacity. I am not mentally ill. I have a problem that they cannot fix. They cannot bring William back. I could be hospitalised because of my suicidal ideation, but knowing they could not fix me, and they would only be removing me from everything that is William would increase the intensity of those feelings. So, what do they do? One thing they haven’t done is give up. But, one thing they have done is respect me and respect my decision. I am a vulnerable, high risk adult. What does that mean?

Vulnerable Adult – A vulnerable adult is described as a person aged 18 years or over, who is in receipt of or may be in need of community care services by reason of mental or other disability, age or illness and who is or may be unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.

High Risk Adult – Current or recent moderate / high risk of intentional self harm

So that is what I am. Am I embarrassed or ashamed to be in this category of society? No. You see just like any other debilitating illness, mental health problems are real. They don’t go away when you take medication. You can’t ‘just get over it’. You can’t make yourself want to live. You can’t make yourself eat or sleep if your body is telling you not to. You can’t stop tortuous memories of finding your son passed away in his cot. You can’t stop hearing the call handler’s voice as she talked you through CPR. You can’t ever stop the image of your child in his coffin just pop into your head. You can’t stop that fear of knowing that tomorrow will be just as bad, after all William won’t be here then either. With these flashbacks and thoughts come physical side effects. Chronic insomnia, days with no sleep, after two, three or four days you start zoning out. In a complete daze, losing hours at a time. Sometimes you imagine things to move, sometimes you think you hear something, but you are alone. It is terrifying. Sometimes the anxiety is so bad, regardless of how much medication or exercise you do, you cannot write, because the tremors control you. Sometimes I cannot stand colour, movement, noise. Why? Because I simply cannot process it. The scores of pock marks on my skin, when in an effort to control my anxiety I pick my skin. Or bite my nails. Or pull a few hairs out. Sometimes I don’t want to talk, or involve myself in the conversation. Why? Because sometimes it is such a huge struggle to even be in another person’s company, when all you want to do is be swallowed up by the gaping pit of grief.

Mental health is not a choice. It does not discriminate. No matter your colour, your religion, or where you were born. If it wants you, it will take you.

Everyone in their life at some point will have suffered a bout of depression, most people have seen or gone through trauma like a car crash, a marriage breakdown, or the loss of a parent. But life after losing a child, is an indescribable journey of survival. A life sentence.

People move on. But I am stuck, sometimes the quicksand is deeper and the struggle to fight to get out is just that, a fight. On these days, I know that if I call the mental health team, they will come with their scaffolding, they will build it up around me as high as I need it to go. They don’t just build it and leave. They wait. They listen with compassion. They cry when I cry. They don’t try to fix me, knowing that I can’t be fixed, they guide, advise, and aid. And most importantly they do not judge, they understand. They understand that mental health is not a taboo. It is very real.

I saw one particular psychiatrist for months. We had intensive EMDR sessions, followed by psychotherapy. As a doctor he wanted to fix me, make me better, but he knew, he understood, all he could do was help to make the path I am on a little easier, so maybe when I get to the end, it wouldn’t be the end.

Not many of you know but at the end of January I spent time in a secure psychiatric unit, why? Because I had tried to take my life earlier that week, I was found in time. Had I not been found, I would not be here. Several days later I knew what that feeling felt like. The desperation to be with William, it is not a means of escape, it is not me trying to escape the pain. It is about wanting to be with my son. To sit there and actively know that what you are about to do is end your life is an extremely courageous and brave step to take. Knowing there is no returning. No going back. To be at a point, where for whatever conflict is taking place in your head, people need to exit their life, is not a cowardly way out. For some it is the only way out of a lifetime of enduring pain. For some it is a means of escape, who are we to judge, that whatever is happening in their head is tolerable or not? Because I for one moment ask you to put yourself in my shoes. If you lost one of your children, what would be your oblivion?

When I was in that psychiatric unit it was very apparent that I am not mentally ill. I have heard of schizophrenia, and psychotic disorders, split personality disorders, bipolar as I am sure most of you have, you might know someone with one of these mental health conditions. But wow, those people do not need shunning, do not need bullying, those who are very poorly require the most intensive round the clock care that can only be given in a secure unit. I sat with one man. I won’t tell you his real name, but I’ll call him John. John was 35, that is what he said anyway. He shook my hand and said hi, my name is John. I politely replied, that my name was Melissa. Within 15 minutes we had repeated that very small conversation over 30 times. Did I mind? No. John told me about his job in a shop. Told me about what clothes he sold, he told me about the people he worked with, he told me where the shop was. John had been in that unit for 5 months. John didn’t have a job. John didn’t work with anyone. I don’t even know if he was 35 and his name was John. But it didn’t matter, because for those 15 minutes he was happy. Is it his fault that he has been afflicted with a terrible mental health illness? Does he deserve it? Did he ask for it? The answer to all those questions is no. But John didn’t get a choice. Schizophrenia and psychosis picked him. I was there purely for my own safety. John was there because that is where he was living.

So I ask you, when you see me walking down the middle of the high street, my eyes bloodshot from the lack of sleep, my hair not brushed because when I left the house I was too busy kissing my son’s casket goodbye to remember to brush my hair, that I am on my way to have more scaffolding put up to help me continue the fight. Without that scaffolding I wouldn’t be here. Without the mental health team I would not be here. I can’t help the way that I feel. I can’t just change the way I feel, it’s very real and all-consuming. Knowing I can make that choice tomorrow prevents me from doing it today. It has worked so far. I have a safety net. Suicide is my safety net. I don’t need judging, I don’t need fixing, I need scaffolding. If you want to judge or fix then please don’t. If you want to scaffold, build away. I do not see it as ending my life, I see it as going to continue it somewhere else with my son, for eternity.

Here we are heading into the third month of 2015. Although December the 14th feels so long ago it is as raw and vivid as if it was yesterday. 79 days. 79 of the most agonising days of my life. I still don’t believe this is real, it still doesn’t feel like William is never going to be here with me, but he isn’t and knowing this, means knowing my life will never be better. All of my life I have always strived to do the best that I can, achieve the most I can, be the best person I could be. I have not always done the right things, said the right things and know I am not perfect, but I knew, I knew that when William was born my life could never be better, could never be more perfect than the moment I held him in my arms for the first time. Knowing this I feel like my life has peaked. That it can never be any better than the short period of time I was blessed to have Grumpus. It can only be different, a different kind of different if that makes sense.

The past week since I wrote my last post has been odd. I have been to see the psychiatrist again and they’ve changed my medication. They’ve assured me that everything I am feeling is completely normal. That feeling like I want to go to sleep and not wake up isn’t about suicide but about wanting to be with William. The two thoughts, that to most people are so similar are actually so different. That they can co-exist and it is ‘OK’ to have these thoughts and live alongside them, for now, for the next few months, years and even the rest of my life. I have sat and thought very clearly about these two concepts, consumed with grief, like I’m in a totally different world to the people around me. Sometimes I sit there and look at the people on the table next to me, in earshot, but I cannot hear a word they are saying, I can see their lips moving but no sound coming out. It is very surreal and it feels like I am viewing life through a window. Like a bystander. Observing what is happening around me but not taking part. Like a silent movie.

No matter what people tell me, try to help me, or even impart their own experiences this is my personal journey, I’m not choosing to process this in the way that I am. Everyday I wake up and feel different from any other day, but the same dark, black, dense fog surrounds me. This week I have made peace in my mind that it is ok to feel this way, I know I have an escape route, a safety net or a get out clause and because I have this I no longer feel trapped. Managing these thoughts is key. Key to not tipping over the edge. The only way I can explain it is that my mind is like a see-saw. Continuing to struggle on is balanced on one end, and not being here balanced on the other, not struggling on and giving up. It is a fine line, a fine line that I’m tip-toeing along very slowly, not expecting anything from myself.

I can’t make any sense of this, and I don’t think it is something that can be made sense of or rationalised. I feel like I’m in a bubble, a bubble of grief, my bubble of grief. When I do things, like go out of the house or go into the office it feels wrong, I feel guilty, guilty that I’m climbing out of my bubble of grief and doing something. But I’m not leaving William behind, I’m not betraying him, I don’t love him any less, I don’t think about him any less. In fact I miss him more, wondering what he would be babbling to me in the back seat, wondering how many times I would have to put his shoes and socks back on after he’s busied himself pulling them off. The concept of doing anything in recent weeks has always seemed impossible, now I can do things, knowing that when it becomes too overwhelming, or I cannot cope, I can climb back into the safety of my bubble of grief, too heavy to carry with me. One day maybe, the walls of the bubble might become thinner, and one day the bubble might pop and I will have the ability to live my life carrying my grief with me, not allowing myself to be consumed by it. But for now, I have my bubble. A bubble I feel relatively safe in.

Like this:

It’s been over a week now since I wrote my last post. That week feels like a lifetime. Everyday feels like a lifetime. Every hour and every minute. As we slowly creep into February I have no concept of the day of the week, apart from Sundays, every Sunday I relive the day that shattered our lives. I didn’t realise that I could feel any worse than I did that day. But Sunday 25th easily took that crown. After being discharged from hospital on the 26th I was home. Thinking well I’ve been to rock bottom, but this last week showed me that there is no bouncing back from rock bottom, you just sit there.

As the week wore on I very quickly found out that I wasn’t able to manage. Struggling even to string my own thoughts together. Thursday my anxiety was virtually out of control. The constant tremors absolutely exhausting. The adrenalin surging through my whole body, it is so hard to explain but the only thing I can relate it to is when you have a near miss car crash and you get those intense butterflies in your stomach and it comes up your chest and into your throat, your heart pounds in your chest, your hands are clammy, a constant headache. Well, that’s where I’m at, all the time. Visibly noticeable to those around me, lifting a drink I could barely hold the glass without it shaking everywhere, gripping a pen virtually impossible. Not able to concentrate, not taking in what people were saying to me. I just had to go to bed. Hoping for some relief. As I lay there and close my eyes, I couldn’t even rest, my eyes shaking with the tremors. How does that work? Why does it happen? I have never in my life felt like this or experienced anything like it.

To say I slept that night would be a lie, laying there with every thought going through my head, What if I’d gone in to him earlier? What if I’d not listened to the doctors and taken him to hospital? Was he in pain? Running through every detail of finding him on the Sunday morning was only torturing myself but I had no control over what I was thinking. As I look at everyone around me I feel like I should be further ahead on this journey, like I should somehow be living with it better. But the fact of the matter is I’m not, I’m nowhere near, not even close, this last week has actually been the worst I have felt since losing William. I didn’t think I could ever feel as bad than the days immediately following the 14th of December but I was wrong. I no longer have that immediate shock, the complete numbness, when you still don’t think it’s real.

This last week has passed in a fog. Some days I haven’t even had the strength to get out of bed, the need to be with William has completely consumed me. William will never be coming back, so where does that leave me? Stuck here, in a life that I don’t want, a life that doesn’t include William. I have never in my life before felt so much despair, there are no words to describe or explain to you what this feeling is like. Can you imagine a time in your life or when something has happened where going to sleep and not waking up, that not living anymore, that taking your own life is the better option rather than going through another minute of this pain. This is where I’ve been.

Until you have been there (and I hope you never are) it’s very difficult to understand. Those that are around me don’t know how to help me, no-one can, no-one can fix this, no-one can bring William back. I’m having daily visits with the mental health team and psychiatrists, numerous visits to the doctors, therapy, and when necessary going to hospital. Not to mention the plethora of tablets I’m taking just to function. But this is my own battle, it has to be one that I want to win, and therein lies my problem. I know that at the end of the road there is a life for me, not a better one, not one I had planned, but a life. However, at the moment I am sat on the path next to the road in a bubble, not wanting that life, because I know that life is without William.

But for now I accept where I am. Accept that I am no further down the road than this. Accept that all these feelings and thoughts I am experiencing are normal, but I will not accept what has happened, that is something I will never do.